Please let us know your experiences of respite care for disabled children

[KateMumsnet]

Hello

Just in case you hadn't seen, Mumsnet has partnered with Every Disabled Child Matters to urge Local Authorities to tell us how much money they will be spending on short breaks for families with disabled children in 2010/11.

So, if you're caring for a disabled child, or know someone who is, do please use this thread to keep us up to date with their stories, so that we can see whether or not money earmarked for respite care is getting through.

Thank you!

Yay I made it in do I win something???

(sorry no help with the OP though)

Title fail - unclickable :)

Ah yes. Ahem. Title fixed now, sorry about that.

Now it looks like I'm imagining things! :o

Er, yes, bumping for anyone for whom the topic is actually relevant. (I just find my way into title-less threads out of noseyness).

Apologies for veering off topic but....

What is this 'short breaks' business?

Is it a calculated term to denigrate desperately needed respite care to a lucky free holiday, for those fortunate enough to have child with a disability, in the eyes of politicians, the general public and/or the Daily Mail?

I know this isn't MN's term but it's fairly objectionable imo.

To me a short break is a few nights away at a nice hotel, with someone else making your bed, serving your food and putting your feet up. Not a few hours lying exhausted on the sofa thinking 'I should be fixing that shelf/washing the floor/reading that school file' and berating oneself for being too depressed and tired to move. Which I believe is a reality for many people.

Short breaks my arse.

PS I'm not berating MNHQ - I know it's the term bandied about by politicians and SWs, hence its use here.

Thanks to everyone who has posted here. It's great to see such a level of interest around the site on this issue. We're now working with Every Disabled Child Matters, to campaign for respite care for all families that need it. See how you can get involved here. We do hope we can build on the interest and calls for change generated by the recent press.

As the wider consultation on DLA closes, and the government confirm their plans, we'll keep watching so do keep us updated on your views.

Best,
MNHQ

Do not quote me but i think that a Short break is the term now used to identify Respite Provision for children with disabilities. Respite is now a word that is not used as much because it is felt that it is not PC.

Aiming High, the government funded scheme, has provided a pot of money which is used by each LA to provide Short Breaks such as regular afer-school clubs, holiday playschemes, youth clubs, playdays for children,overnight stays etc.

Providers can bid for the money to support the children. The bids are then assessed and money is allocated to the approved scheme by the LA. If the LA has not used up the allocated funding by the end of this financial year the unused pot of money goes back to the government.

The government has reduced the Aiming High budget available to LA's next year

Hi!
Old QUOTE from David Cameron on short breaks

I have just submitted my letter with a paragraph about my son, and our family to our local cllr Judith Blake (Leeds City). The EDCM tool is very user friendly and it was really simple.

I just found a quote by David Cameron from 2007, which could be very useful for your SHORT BREAK campaign:

" Third - and this is something that anyone caring for a disabled child or relative should never forget - take a break. Regularly. My family is lucky in that we can get extra care. Many are not so fortunate. But whenever you have the chance to take a break, or to get extra help, make sure you do.

Parents of disabled children are not volunteers. We all care deeply about our children, but that doesn't make us superhuman - and no one should try to be what they are not. An important part of being a good parent is to recognise your limitations, take plenty of breaks, have enough rest and make use of extra help when you can. That is all part of making the best possible contribution to the life of your child." (David Cameron Rt Hon MP 2007)

Book:

J.Harrison et al. (2007) Different Dads. Father Stories of Parenting Disabled Children. Foreword by Rt Hon David Cameron MP, Jessica Kingsley Publishers, London.

Well-said Mr Prime Minister - what changed since 2007?! Well you are in power now, and it's up to you - and sadly you are no longer father of a disabled child.

Good luck parents with your campaign! You may decide to use the quote above and remind Rt Hon David Cameron!

A very worried mum.

My 7 year old son has learning difficulties, autism and epilepsy. He requires full time care. Disability Challengers (Surrey) is our local charity that provides short breaks for my son in the form of after school clubs, saturday play sessions and holiday clubs. This gives my son a place to play and socialise with his peers. This allows us the opportunity to have a break from caring as well as spending quality time with our 3 year old.
Due to government funding cuts for short breaks for disabled children , the future of Disability Challengers hangs in the balance - I can't imagine life without this wonderful resource.
Please support us to say no to funding cuts to Disability Challengers by signing this petition (it's free and easy) :
www.ipetitions.com/petition/nocutstodisabilitychallengers/

Another very concerned mum

Hi,
I live in Kingston,South West London and I have a severely disabled 14 year old daughter, as well as 3 other children. I am not sure what support is around in other areas, but we receive family support through our local social services - and I can't commend the family support side of our social services enough!:)(Sadly I can't say that about all SS in our area in general!):( They provide a trained support worker who comes into the home and cares for the disabled child, while you can get on and do other things! In my case, being a mum to my other 3 children the youngest being my 4 year old son, as well as teaching in the afternoons. I was referred to the service by the deputy head of my daughter's special school, after my youngest son was born and I was finding it really difficult to cope with 4 children. I had never before had any help or support, and it took about 18 months for all the assessments to go through, so it was not until my disabled daughter was over 11 years old, that we received any help. But it has seriously turned my life around! We receive 6 hours a week - so basically 2 hours after school 3 times a week, and while I would dearly love more hours, it is enough for me to just get a break. We have a regular support worker, who has become like part of the family, and the times when she has been unable to come in, all the other workers we have met have been really fantastic. I just thought it might be of interest, and also to know if anyone else receives this type of support. The worry is that a campaign has started for respite care - when that does not necessarily suit all families.I would be really keen to see this campaign supporting different kinds of respite care, not just short breaks! My daughter has never been away from home, or indeed from me, and having someone come into the home and provide help and care for a disabled child, for me personally has been far preferable to sending my child away!

Hi MummyNadine! The Short Break Campaign is for YOUR DAUGHTER too! The money provided to local authorities also to cover for your family's support at home NOT just for those who are accessing short breaks away from home. Pls write to your Cllr and ask them how they going to use the money to support you at home with your daugther!

I understand you very well as we were in a very similar situation few years ago. Unfortunately, 3 years ago we had to place our son (then 13 years old) into a residential school Monday to Friday, because the local authority couldn't meet his Special Educational Needs in its local special schools AND Social Service withdrew the 3 hours per day home support. Our son is profoundly disabled with complex needs and the intense care and the constant fight with Social Service, Education, Health, Housing etc. had taken its toll on our physical and mental health. We are simply unable to care for him without support now.
The more support you get now the longer your daughter can stay at home. Good luck!

my dd is now nearly 16 and is severely disabled(CP) and is Dependant on others for all her care and help in doing most things.
we are lucky that we have had respite since she was about 6, before that we had a link family which was ok, but relied on their good will way too much.
dd goes away for respite and that suits us as it gives us a proper break and as her respite is based at her sn school it gives her a chance to hang with her peers as a teen should.
we have a good respite package now, it has been increased over the years to meet our needs. but It won't be increased again due to the cuts.
sadly there is never enough money and the respite budget is all ways over budget in about may each year as SS are never given enough money.
I do worry that all this talk of short breaks and changing the way respite is provided will affect us and we will lose this life line and have it replaced by a cheaper daytime youth scheme or something like that,
people should be able to choose what respite suits them and their families.

must just add that I thing this campaign should not just be about "children" it should be about respite for all families with a disabled person, as children do become adults.

I agree 2shoes, carers should be supported. Without us the welfare state would go bankrupt as we save billions of pounds every year for what in return? £50 a week carers allowance if you are lucky and don't have any ambitions to go to work in amenaingful job. My mhusband gave up his professional career 12 years ago completeley because we did not have any support at home to care for our severly disabled son. Social Service said he was too disabled, Health said his needs were not severe enough to meet continuing care - because he was under 4 st!
Professionals used to say: 'Oh, you are coping so well! You are such a nice family!"
They dismissed our plea for help regardless that we were saying that we were at breaking point. The immense stress and physical exhaustion lead to my first mental breakdown and finally we were granted some home support and later some short break days. In order to enable me to go out to work in part time, my husband stayed at home since. This year he is 65 so he will lose the Carers Allowance which means he will be looking after our son and his frail 91 years old mother for NOTHING! Without the short break support I would not be able to work and we would lose our house, our youngest son's future would be severely compromised. Having some quality breaks is only a tiny contribution to our son's life if you compare with all the human and financial sacrifice we had to make in the past 16 years. All which will result in a poor pension, health and a very worrying bleak future. Short break provisons should be seen as long term investments! No money could match the benefits of the right and timely support.

Hello everyone.

Thanks for your posts so far - please do keep them coming.

The good news is that Scope and TreeHouse, the national charity for autism education, have all agreed to support our joint campaign with EDCM, which urges LAs to tell us how much money they will be spending on short breaks for families with disabled children in 2010/11.

We'll keep you updated as more organisations join us!

what's respite care? i live in staffordshire and my daughters told me she's your daughter get on with it. and the other one is why do you need respite care? you get paid £53 a week to look after her 24/7. i'm so tired and because the lea can't find my daughter a isp for schooling she gets 6hrs home tuition a week this isn't enough to get child benefit.oh and btw if you don't get child benefit your not elligable to claim any other benefit,we are expected to live on £53 a week and i'm at the end of the road.

Pls note, Mumsnet has another thread on this topic called 'RESPITE CARE FOR DISABLED CHILDREN'. I find having two threads on the same issue confusing.

Hello

I have been disabled since birth and my parents were refused the help they required from all our local authorities and told to ?get on with it!?

I am now 64-years-old and nothing has changed over the years and I?ve been treated like a clinical junky and registered as mentally subnormal. This is a clear infringement upon my human rights and need help to have this stigma revoked. I also feel medical professionals should now be more ?disability? awareness instead of ?ticking? us in a box where we don?t belong.

I have a severely autistic 12 year old

We get 1 night a week respite. And 2 days a week playscheme (sometimes on a Saturday which helps our other kids but not my attempts to work!) during school holidays. Plus 15 hours a week direct payments in school holidays. I use that to pay for people to help me so I can get all three children out (it's a 2 person job). I also try to work full time.

Actually our package is good now - and we all really benefit (including ds1 which is important). The respite centre he goes to is absolutely brilliant and they have taught him a lot - he loves going there. We were meant to get a 2 night short break once a year but my son can't cope with that ('wrong' day for respite doesn't work - respite occurs in the pattern he knows, changes cause great anxiety) so I told them not to bother. We tried it once and it was disastrous, with the fallout lasting several weeks. And we couldn't enjoy ourselves knowing ds1 was upset at being in respite on the 'wrong' day (he loves respite, but it has to be on the 'right' days).

They keep trying to cut our direct payments. A few years ago they did, which meant my son got very bored as I couldn't get him out of the house every day. He ended up covered in bruises (self injurous behaviour) and i ended up covered in bruises. I emailed SS told them I held them responsible for the bruising, they came out and had a look (within 24 hours) and it was after then we started getting sensible provision.

I have a meeting with them in April and have been warned they want to cut my package (not just mine - everyone's). They are trying to replace respite with clubs - seemingly failing to understand that my son cannot attend clubs unless he has 1:1 and is contained within locked doors. I am digging out the photos of bruising and we shall see where we end up.

I have 2 children with ASD.

Both are severe enough to have access to specilaist education, one will need lifelong care and the other is violent.

We get access to a holiday club for whcih I am grateful but as the boys cannot access the same place (one would injure the other) that in itself is hard work: both resources require car use to access, and are 5 miles apart. One has 10.30 - 3.30 for teh give days of hal term, the otehr has 10.30- 3.30 two days, and 12.30 - 3.30 three days; my two other children and I may as well live in the car!

Of course should we lose DLA the car will vanish.

All children in our borough get access to a holiday club: 10.30 - 3.30, only the support is specialised.

My eldest turns 12 next year and will then lose all the help we get; as he is so aggressive I have no idea how we will manage, but no club exists after 12. To put it in context I have had to restrain him three times this week, and due to school moves I expect that to get worse- ASD and transition issues etc.

The other will also lose support at 12; our request for DPs was quite literally laughed at.

We would like to move closer to family as they would help but the cuts home are some of the worst around wrt to SN and we feel we have been effectively exiled from our home County by these: we cannot risk ds3's long term needs in the hope of a break whilst my parents can still help.

We are currently paying someone for a day a month respite but again, that's only as long as DLA is recieved and other cuts mean the child who is next up for assessment gets no professional support outside school now which in turn makes dla harder to get.......

DH has a history of severe depression and I dread to think how I will cope if he gets ill again and we lose respite as it is.

I also agree it should be about ALL carers, including those who are children themselves.